Advice for new and expectant parents

20 Oct

This from the National Down Syndrome Congress. Their page for new and expectant parents.

After reading this, imagine a future where autism is diagnosed via some biomarker, potentially prenatally.

If you have arrived here, there is a good chance you have received news you did not expect. As an expectant or new parent you have been told your child has Down syndrome.

If your child has arrived, please accept the sincere congratulations of our entire community.

Whether you are celebrating the birth of your child or anticipating its arrival, here you will find the basic information you need — to manage your pregnancy, plan for the delivery and to get started on the rewarding processes of having a child with Down syndrome in your life.

As you embark on this passage, the NDSC offers two thoughts.

First, you are not alone. Instead, you have become part of a large, deeply caring and warmly welcoming community. When you are ready, please contact us. We can answer what seem to be terribly daunting questions and, if you like, put you in contact with other parents who have been exactly where you are now. We can promise you will find them supportive, knowledgeable and above all sensitive.

Second, take care of yourself. Whether you are expecting or have been joined by a new arrival, the one thing that is known that a baby – a little packet of human potential just waiting to explore his or her world – is counting on you. So, rest, relax and enjoy.

Imagine a future where autistic infants are referred to as little packets of human potential. Where the birth of a child is an occasion, where congratulations are in order. Where people aren’t arguing over person first language, but accept person-first as a value. It is the person that is celebrated, the person who is valued. The disability is neither something to celebrate or disparage.

Under “Self Advocates”, their website includes Join the NDSC Board. Imagine a world where autistic self-advocates are not in a separate organization or added to large organizations as advisers.

Imagine a world where we accept the phrase, We’re More Alike Than Different.

It is not only possible, it is coming. It is the future.

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14 Responses to “Advice for new and expectant parents”

  1. Landon Bryce October 20, 2011 at 14:03 #

    It seems to me that the most significant impact of the use of biomarkers to to identify people with Downs is that most people with Downs are now aborted.

    Imagine being part of a group that is likely to suffer a similar fate when biomarkers are used to diagnose autism.

    Now imagine reading an article about how nice that will be for our parents, because they might get a sweeter welcome message.

    Now imagine the extraordinary damage that this focus only on what feels nice for mommy and daddy is doing daily to those of us who actually have autism.

    • Sullivan October 20, 2011 at 17:36 #

      Landon Bryce,

      It seems to me that the most significant impact of the use of biomarkers to to identify people with Downs is that most people with Downs are now aborted.

      Absolutely. This has been discussed here many times. We can either try to learn from what is going on and try to divert that future, or try to work against that future. Which do you chose? I’m in the latter camp. If we destigmatize autism, much like the parents of DS kids are doing, we can create a different future.

      Imagine being part of a group that is likely to suffer a similar fate when biomarkers are used to diagnose autism.

      I know more about this than you imagine. Believe me.

      Now imagine reading an article about how nice that will be for our parents, because they might get a sweeter welcome message.

      Not the point at all. You can interpret it as you wish, but don’t project it onto me, please.

      Now imagine the extraordinary damage that this focus only on what feels nice for mommy and daddy is doing daily to those of us who actually have autism.

      If you find the above message from DS parents “extraodinarily damaging”, suggest something different. Frankly, such a message is a path to a different future than we are on track for right now.

      My child “actually has autism”. I have as much a right to speak for a better future as anyone in this discussion. Just so we are clear.

  2. Victoria Gillen October 20, 2011 at 19:00 #

    I parent both flavors of human – Downs & ASD. . . parents of kids with ASD face an overwhelming barrage of info – and it does NOT start with a “welcome” – it’s more like “we’ll support you through your HORRIFIC travails” and how to handle the overwhelming PROBLEMS and blah blah… where’s the joy? That is the single biggest difference. ASD, thanks to lack of etiology and tales of recovery, presents an array of often devisive and judgemental material (if you haven’t used bat-guano-dip therapy you’re dooming your child. eg) Downs is Downs. You will never hear of “recovery.” Amazing advances, yes. Full recovery? no.

    In normal American culture parents “own” their children: “my little Chris will grow up to be..” This is totally bogus, IMO, in any scenario… and stresses families tremendously. It is healthier to let go of expectations (those “dreams” that are “shattered” by the Dx) and acknowledge the miracle of a new person. That’s easier with Downs – and that’s why there’s a difference.

  3. Anne October 21, 2011 at 10:07 #

    Victoria, thank you for providing your side-by-side real-life comparison.

  4. Anne October 21, 2011 at 10:18 #

    Landon,

    I was surprised by your post; you’re usually quite astute. Did you misunderstand what the National Down Syndrome Congress is? It is a Downs-POSITIVE organization, the opposite of what your post implies you think they are.

    The point of the post, IMHO, is to contrast “your baby is a bundle of potential even if he/she’s not what you expected” with “autism will steal your child’s soul and turn him into a monster who will ruin your life” from Autism $peaks.

  5. Landon Bryce October 21, 2011 at 15:12 #

    Anne:

    I do not mean to be critical of the Downs material at all. What upsets me is that this post promotes biomarker research for autism without acknowledging that eugenics are the inevitable result of that research. This post, not the material it praises, is about how much nicer biomarker research will make messages for parents. That’s true. But I think suggesting that it is 100% a good thing, as this post does, is dishonest and unethical. I think most people who donate to the Autism Speaks and the ASF don’t really understand that eugenics is a primary focus for both organizations.

    • Sullivan October 21, 2011 at 18:30 #

      “What upsets me is that this post promotes biomarker research for autism without acknowledging that eugenics are the inevitable result of that research”

      It acknowledges that biomarker research is ongoing. One can complain about biomarker research but it isn’t very valuable since biomarker research is a natural fallout of other parts of research. One who argues against biomarker research must also accept the harm that not having biomarkers will cause.

      Down Syndrome is an interesting example. The biomarkers are visible, not just the genetic test. By phenotyping this group and studying them as a group, advances have been made. The life expectancy of a DS child is much greater than it was a generation ago.

      Biomarkers for autism will not only allow for more focused research on a very diverse population, they will point to the diversity of biology which could result in

      As an aside, the idea that a prenatal genetic test will be available for autism is very unlikely, in my opinion.

      This post, not the material it praises, is about how much nicer biomarker research will make messages for parents.

      Interesting interpretation. Not mine. Just to remind you, I wrote the article above. So I understand what thought process went into this article. I point this out not just to set the record straight, but to encourage you to reconsider the article.

      I think most people who donate to the Autism Speaks and the ASF don’t really understand that eugenics is a primary focus for both organizations.

      It isn’t that I don’t understand this point. It is that this point is wrong. Here is what ASF has funded in the past. Hardly a portfolio of a groups whose primary focus is eugenics. I point this out for two reasons: first to correct the incorrect statement. Second, to point out that when you make such a clear, bold, and incorrect statement, many people will just end the discussion there. You do yourself and your message no great service.

      What goes into the thought processes of parents when it comes to prenatal decisions involving raising a disabled child? I’m sure you have ideas, but I have the experience. It’s the flip side of the argument you seemed to be implying with your “actually has autism” statement. We both have valuable input on the subject. I can tell you that the type of information above from the DS Congress is the sort that should get out early to parents. Similar information should be made available for autism now, before any potential prenatal biomarkers are available. And that is the message of the article I wrote. Again, as the author, I know what that message is.

      • Sullivan October 21, 2011 at 22:39 #

        Landon Bryce,

        what would be very helpful is if you could point out what in the above post led you to believe it promotes biomarkers.

        The statement I made was purposely intended to be neutral on the issue of biomarkers. “After reading this, imagine a future where autism is diagnosed via some biomarker, potentially prenatally.”

  6. sharon October 21, 2011 at 23:23 #

    @Victoria, I think you make a good point in your post above. Not understanding the causes and long term projections of how Autism develops over a lifespan leads to all sorts of concerns. But I’d like to suggest there’s an additional issue, and as a parent of children with both ASD and DS you will know far more than I so please correct if I am wrong here. But I suspect part of the issue respective behaviours. My understanding is that DS children are quite affectionate, loving and often joyful, and are not so prone to episodes of self harming, meltdowns, destructiveness, sleeplessness and such. Those more challenging ASD behaviours are part of what drives the fear of ASD I believe. Parents feel emotionally shut off from their child in many cases, and they watch their child suffer terribly as they struggle to manage sensory overload, communication difficulties and so on.
    I still think the DS organisation mentioned above is right on the money with their approach to parents, and I agree with Sullivan that it’s a good model for the ASD community to consider. Just wanted to suggest that what motivates many parents is not just fear of the unknown (ASD) but also the known, being the more debilitating and distressing aspects of autism.
    PS. In saying this I in no way mean to minimise the challenges that people with DS face.

  7. Landon Bryce October 22, 2011 at 01:59 #

    Sullivan,

    I read your post as a series of aspirational statements:

    “Imagine a future where autism is diagnosed via some biomarker, potentially prenatally. . .”

    “Imagine a future where autistic infants are referred to as little packets of human potential. . .”

    “Imagine a world where we accept the phrase, We’re More Alike Than Different. . .”

    That does not seem neutral to me– it sounds like you are painting an image of glorious future:

    “It is not only possible, it is coming. It is the future.”

    And you and Victoria are right that that future will be able to give more supportive messages to parents.

    And I am right that it will very likely be one in which people like me will be aborted.

    You are also right that the ASF has chosen to promote the work it does that looks least like eugenics.

    • Sullivan October 22, 2011 at 02:14 #

      Thanks for that. I should have worded the instance with “biomarkers” differently. It was not “aspirational “.

      The others are certainly not neutral, and not intended to be. Certainly I stand by the idea that I would prefer a world where parents are told that their children are little packets of human potential than the message that is most common today, for example.

      “And I am right that it will very likely be one in which people like me will be aborted.”

      A lot depends, doesn’t it. It depends on what people do now. I assume that there will not be a single biomarker, and, if I may be so frank, a parent told that his/her child would have the potential to one day grow up and become a teacher would be far less likely to take that option than if the parent is told that their child will have multiple disabilities.

      “You are also right that the ASF has chosen to promote the work it does that looks least like eugenics.”

      I would respectfully ask that you phrase such sentences in a manner which does not project onto me. You can not claim that I am “right” for something that I neither said nor intended to say.

  8. daedalus2u October 22, 2011 at 02:01 #

    As someone who has read quite a lot about autism and the genetics and physiology of autism, I think that there will never be a genetic test for autism.

    Autism is not a property of a genotype (the way that DS is), autism is a property of a a phenotype, like height, weight, personality, those sorts of things.

    Identical twins can be discordant for autism. Identical twins cannot be discordant for DS. The degree of DS symptomology can be quite variable (as can the symptomology of ASDs).

    I agree with what Sharon has said (and also don’t want to minimize any difficulties people with DS and their caretakers have). One of the problems of autism is that people with autism are treated badly by some people without autism. This is a problem that people with DS do not have to the same degree as people with autism have. This is not about the people with autism or DS, it is about people who are interacting with people with autism and DS.

    I think it specifically relates to some of the core deficits in autism, deficits in communication. My hypothesis is that when a person cannot be communicated with, that feelings of xenophobia are triggered via the uncanny valley (to some extent). Because people with DS don’t have the core communication defect of ASDs, they don’t invoke the uncanny valley and don’t invoke feelings of xenophobia to the same degree (my hypothesis). These feelings of xenophobia are purely due to physiology (in my hypothesis) and so have no moral value. What the person who has those feelings does with those feelings of xenophobia does have a moral value.

    If my hypothesis is correct, then the only way to deal with it is to help people without autism to understand and ultimately get over the feelings of xenophobia that they have directed toward people with ASDs. I think that as it stands now, people with feelings of xenophobia directed toward people with autism have no idea where those feelings of xenophobia are coming from, so they attribute the feelings to an accurate perception of the “worthyness” of the people they feel xenophobia toward. I think there is xenophobia directed toward people with DS too, but perhaps not as strong because of the specifics of communication and the uncanny valley, making that xenophobia easier to overcome.

    The only way to help them get over the xenophobia is for people without autism to have enough exposure to people with autism such that the people without autism do not experience xenophobia.

  9. Landon Bryce October 22, 2011 at 02:50 #

    Sullivan:

    We agree that a future in which parents are told their children are bundles of potential is a great goal. I would ask that in the future you not link Downs, autism, and biomarkers without including the fact that most fetuses likely to develop into people with Downs are not born now. Or to suggest, even only through carelessness, that a future modeled on Downs is one we should all desire for autism.

    You use the ASF’s own promotional materials to defend them. I do not find that a credible defense.

  10. Anne October 22, 2011 at 10:36 #

    Landon,

    Although I didn’t get a chance to meet you at AASCEND’s conference, I’ve read a lot of your blogs. I’m a bit surprised by your assumption that Sullivan’s one of the bad guys and that ASF is lying in its promotional materials to hide their (alleged) eugenics agenda.

    I am not very familiar with the ASF, so could you please show some credible references that contradict what their promotional materials say about the types of research they fund? (Credible = some kind of audit or journalistic expose, not random posts at WrongPlanet.)

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